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One of the many highlights of the Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice. Today we are delighted to announce the joint winner of the EAPC Early Researcher Award – Dr. Silvia Gonella. Here Silvia reflects on the barriers to undertaking research on end-of-life communication in nursing homes, and how to overcome them.
I am honoured to receive this year’s EAPC Early Researcher Award and to share with you what I have learnt about research in end-of-life communication in nursing homes.
I began my interest in communication in nursing homes as a teenager when volunteering and seeing several residents who simply wanted someone available to listen to them. Then, while a nurse, I have experienced the importance of communication to establish sound relationships and provide individualised care. Communication is an essential means to deal with the vulnerabilities which people experience and they may benefit from communication which focuses on meaningful dialogue and a connection through relationships.1 People who spend their remaining life in a nursing home are usually highly vulnerable, with advanced frailty and may have dementia, with distressing symptoms.2 I soon realised that improving communication skills in this setting was essential and could have improved care outcomes for both residents and their families.
Ensure transparency of study aims and processes to boost recruitment and maintain non-judgemental attitudes.
The first challenge that researchers should be aware of when conducting research in nursing homes is difficulties in recruitment. Nursing homes may refuse participation for fear of laying bare problems and that their work will be negatively judged. Moreover, the cultural background of the home’s management team as well as the taboo of death, even among healthcare staff, may influence participation. Thus, it is likely that only people and facilities more sensitive to palliative care communication and those homes that question the quality of care provided will adhere to such research, which means a potentially positively biased picture. So to maximise recruitment it is vital to clearly communicate about the study aims, how research will be carried out, the fact that homes and individuals will not be identified etc. It is also important to maintain non-judgemental attitudes, which involve acceptance, genuineness and empathy, and are reflected into one’s words and body language.
Researchers should be adequately trained and be offered emotional support by regularly debriefing with peers.
Research on end-of-life communication often relies onnarrative data collection methods including in-depth interviews. Researchers may experience emotional distress. They may feel guilty if they elicit family and caregivers’ suffering while interviewing if poor communication and scarce involvement in shared decision-making emerge. Moreover, boundaries of the researcher’s role may become blurred and researchers could be in trouble on the type and extent of support they should offer when interviewing a participant. It is therefore helpful to ensure that researchers have training in interviewing, but also about the ethical boundaries of their role and how to support interviewees’ potential distress. Faculties should introduce a specific curriculum to promote communication abilities with contributions of communication experts, psychologists and bioethicists. Then, each research team should acknowledge the range of their perspectives and skills and utilise them to promote a supportive environment. Research teams should make explicit their duty of care to team members by saving time for field work briefs and debriefs. Counselling may be occasionally required from outside the team.
When exploring culturally-sensitive topics if possible researchers should share a common linguistic and cultural background with participants.
End-of-life communication is a highly culturally-sensitive issue and misunderstanding based on language and cultural difference can affect the experience of participants, the quality of data as well as their analysis. It’s not only a matter of linguistic background but also entails the understanding or sharing of cultural beliefs and values. Such kind of sharing promotes a sense of closeness, can make participants feel more comfortable and relaxed, and increases openness and chemistry with the researcher. If this sharing is not possible, having within the research team different disciplinary backgrounds, professional and personal experiences may help to achieve more rapport and in-depth understanding of participants’ experience. There is still a long way to go to improve end-of-life communication in nursing homes. I hope to continue to contribute to this important topic and inform training of healthcare professionals who are involved in end-of-life communication to improve the quality of care offered to older persons, particularly those requiring nursing home care and their families.
- Gastmans C. Dignity-enhancing nursing care: a foundational ethical framework. Nurs Ethics. 2013;20(2):142-9. doi: 10.1177/0969733012473772.
- Hendriks SA, Smalbrugge M, Galindo-Garre F, Hertogh CM, van der Steen JT. From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2015;16(6):475-81. doi: 10.1016/j.jamda.2014.12.016.
Links and resources
- mySupport study explores the benefits of structured family care conferences and written information in supporting family caregivers of nursing home residents with advanced dementia who have to take decisions for their relative’s end-of-life care. Find out more here.
About the author
Silvia Gonella is a research nurse at City of Health and Science University Hospital of Turin (Italy) and has been collaborating with the Department of Sciences of Public Health and Paediatrics at the University of Turin (Italy) over the past 10 years. She has clinical and research experience in oncology, care of the older person and palliative care. She has experience in both quantitative and qualitative primary research methods as well as in literature reviews methodologies.
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